Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Friday, July 30, 2010


We are going camping this weekend. I'm a bit nervous and not too sure about what Kara is going to eat while we are gone. Fruits, and formula, I suppose, along with her barley cereal and Kix. I am preparing myself, I've packed the epi pen, the benedryl, the motrin, the insurance card, the letter from our doctor and I think I'll even bring my file of her medical records. Just in case. Oh, and LOTS of diapers and wipes!

As I was preparing the typical camping foods this morning, I checked the labels on everything. Pasta Salad? Nope, can't have it, the dressing is soy bean oil. Rice krispie bars? Nope, triple whammy - rice krispies, peanut butter, chocolate. Hmm. She can't have fruit snacks anymore because of the sorbitol. I picked up some more dehydrated fruit and also some freeze dried fruit. Hopefully she can think of this as her "dessert". She better get used to eating other veggies too, because of the stop on the peas and green beans.

We are planning on steaks, hot dogs and hamburgers so I'll have to check the hotdogs I have and hope she can have those because she won't eat hamburger so I really doubt she'll eat any steak! Poor baby. I think the formula is really going to start being her main food now for a while until we get things figured out better for her. She doesn't really have the patience to sit and drink a bottle anymore unless she's really tired. Hopefully if she's hungry enough this will work. She's still not too fond of it out of a cup though, which is fine with me for now. At this point I don't care if she's three and still on a bottle!

Here's hoping to a good weekend with no food reactions! Life does have to go on and it will be a good getaway for all of us. She's getting pretty good at walking now, hopefully she doesn't learn how to RUN while we are gone!

Thursday, July 29, 2010

Forbidden Foods

Here's our Forbidden Foods list now.

Other Legumes

She can have minimal amounts of soy.

Poor Baby!

Kara had 18 pokes on her back today to test for allergies. This is in addition to the 12 that she had 4 weeks ago. She cried on my shoulder as the nurse poked her each time. Poor baby!

This test started with cleaning off her back. She was slightly broken out in eczema again, after having her completely cleared up 2 weeks ago. When they rubbed the disinfectent wipe across her back, she started crying. It had to burn so bad on her poor, broken out skin!
The nurse then made 3 columns with 6 lines each, beginning with one control and one histamine. Then she went on, poking the foods, the dusts, the animals, until they were done. This is what she looked like immediately after the pokes were done:

She fussed but then we side tracked her with bubbles. Good idea Nurse!

This is what my poor baby looked like about ten minutes after the pricks went in.

After all of this, we got negatives. This histamine spot reacted bad, not too sure why all those hives happened. They washed her back off and rubbed her back down with cortizone. I couldn't believe that she reacted that bad, her reaction to the histamine a month ago was nothing compared to this!

Allergist Appointment # 2

I don't even know where to start this after our appointment today. I feel like we are moving backwards in our journey with Kara.

We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.

Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...

Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.

We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.

I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)

So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.

Wednesday, July 28, 2010


Kara seemed to snap back to her regular self about as quickly as things started so by yesterday morning she was completely over "it". Whatever "it" was that got to her in the first place, we may never know.

She has her follow up appointment with the allergist tomorrow afternoon and I'm SOOO anxious for this appointment. I feel crazy for being so anxious about it. It's going to be a long morning at work and a long drive to St. Cloud at the rate things are going for me. I have a page of questions this time for the doctor and have done a lot more research since we saw him last 4 (!) weeks ago already! I've found that other Mommy of FPIES Babies blogs are the most informative. From what I've read based on other Mom's experiences, I'd say Kara is probably about the middle as far as severity goes but we are just beginning this diagnosis. Who knows what the future has in store for her. I've also signed on to a community message board at babycenter.com and there is a group especially for FPIES. I started this last night so I'm asking lots of questions and hoping for answers, and also to give my advice based on what we've experienced. It's nice knowing there are others out there experiencing very similar situations to what we've experienced!

I gathered all of Kara's medical records today from the hospital and the clinic. I was smart this time and got copies for myself as well and will file them all together so I don't have to keep doing this over and over again. It's also a nice refresher to look back on to see when things happened and how they happened, as well as keep track of her weight ups and downs. I'm trying to get more organized hoping it will make things easier for me because this has been consuming my life lately!

I'll update as soon as I can after Kara's appointment tomorrow.

Monday, July 26, 2010

Just When Things Were Going OK...

As we were getting ready for our busy Monday morning, I had to stop and change a diaper right before we walked out the door. Typical, I pretty much come to expect this each and every morning. As I was walking Kara downstairs to daycare I got a whiff of a really foul smell, only to find that she had another icky diaper. I gave the report of how her bottom is raw but she seemed to be OK and went on with my day. Brian called me mid morning to let me know that he talked to our daycare gal and she'd had a few more icky ones. I brushed it off as nothing and went about my busy day. Shortly after that something clicked and I remembered how quickly my poor baby gets dehydrated from these episodes and what happens when that's the case. I panicked and called daycare myself only to hear Kara crying in the background and was told that she just had another one. Her bottom is AWFUL. I assured her that I'd be there right away to get her, the sound of Kara crying and the thoughts of IV sticks, fluids, the whole works scared me to death. I quick gave out a report to a co-worker, nearly teary eyed and was running out of there to get my poor baby.

Kara was fine when I got there so that relieved me some and I realized how much I overreacted once I got home only to have her cautiously walking across the room, chit-chatting with herself along the way. She went down for a good nap and I was thinking maybe it was a fluke thing. She just woke up now and is having her bottle, but we did have another icky diaper. Damn.

I have a call in to her doctor to see if/when we should start her on medication. I know she can have some immodium and/or zofran but it's only to be used in extreme cases. I don't quite know what extreme is at this point, we've been through it all.

Wish us luck!

Sunday, July 25, 2010

Week Wrap-Up

We have been on a nice, even keel for the past few days with Kara, nothing major has happened. There is something that she's been having that bothers her once in a while but I can't, for the life of me, figure it out. She's been having really icky diapers a few times a day that literally BURN her bottom, even though she gets changed immediately after. I don't know if it's too much fruit, a certain vegetable, something in a cracker that she's gotten, no clue. It's frustrating but it's minor compared to what we've gone through with her in the past.

We have her one month follow up with the pediatric allergist on Thursday down in St. Cloud. I'm really anxious for this appointment and it's the start of a busy four weeks for appointments for her. It's hard to believe the changes we've gone through in this last month. It's been life changing!!!

One thing that we need to talk to the allergist about is Kara's possible asthma. Her nebs are doing wonders and as much as I'd like to think she does not have it, I'm pretty sure that she does. I'm really hoping that he'll run the other environmental and animal scratch tests too so we can have answers to that before it becomes a problem. He had mentioned that we'll be following up with a gastroenterologist but we're one step ahead and already have those appointments made.

One thing that we did this weekend is tried eggs with Kara. I was SO incredibly nervous to give her them but knew we needed to - if that was something she could tolerate it would open up some more options on feeding my babe. After a negative blood test and scratch test for the egg allergy, I decided it was time I try it but I was still so nervous about an FPIES reaction. I mixed the egg up with some of her formula and scrambled it up, it worked out pretty well! Kara loved it, eating almost the entire egg. I watched her like a hawk for the first few hours waiting for something to happen and nothing did! Yay! She has a new food she can eat!!!

That's about it for what's been going on lately, other than three beautiful days at the lake. We are ready to take on what this week has in store for us and like I said, anxious for Thursday's big appointment. I'll keep you updated! :)

Wednesday, July 21, 2010


My 14 month old baby is finally starting to walk!

Kara was early at rolling over, early at crawling so of course I thought she was going to be an early walker! Her sister walked at 10 months and she beat her at everything else! Kara would be so close to walking and then get sick where she'd just lay on one of us for 3 days and then cling to us for a week after her sickness. It has been one set back after another for her. In the last few days she's improved more and more by the day. Tonight we were amazed as she'd stand right up in the middle of the room, take a few steps and carefully sit back down. She's making progress so as long as she stays somewhat healthy, we should be there soon!

Which One?

I wasn't able to get Kara in to see the gastroenterologist until August 12th down at MN Gastro Pediatric Clinic. In the meantime with all of these reactions and things going on, I thought I would see what I could do to get her in sooner. I called down to St. Cloud to see if we could be seen any sooner there. They have an appointment on August 6th with a doctor through Fairview that I took for Kara for now while we figure out which place we are going to go. I'm running a mental list of pros and cons of both and am totally undecided about where to go. Can we do both, just to get a second opinion if needed???
I think I'll be calling the insurance company again tomorrow...

Another Reaction?

Brian's Grandma made me a pot of soup for Kara after the possible hives reaction to the Cambells Vegetable. All it has in it is peas, carrots, celery, potatos and a little bit of chicken, along with chicken broth. I froze some and she's had some for supper the last two nights. I was really thinking this was going to be safe for her but the last two nights Kara has been really fussy starting around 7:00 which would be two hours after eating supper. This fussiness has lasted about 2-3 hours and both nights was followed by a nasty diaper. I'm thinking this is another FPIES reaction and all I can figure out is that it may be from the chicken. She had a minimal amount - 3 little bites, maybe and hadn't really had chicken before since all the baby food chicken had rice flour in it. I don't know what our next step is, other than wait for our specialist appointments.

Tonight I put her in the high chair for supper and put her plate on the tray. She looked at it, closed her eyes and started shaking her head, like "no way am I going to eat!" She nibbled a few bites of bread and a few bites of fruit but flat out refused everythign else. Before bed she took a bottle and went to bed just fine, no tummy aches. I'm sure we'll be up at 2 a.m. with a starving baby!

Monday, July 19, 2010


Last Thursday Kara had an appointment with our family doctor again. This was an appointment for the hives but also for us to develop a "plan" for Kara's care, on more of an emergency basis. Basically, if we end up bringing Kara to the ER because of a reaction, she's going to need IV fluids immediately. Kara is EXTREMELY prone to dehydration and has horrible veins, especially when it gets to that point. In the past, we've been told to come back in if she doesn't have x amount of wet diapers in x hours, doesn't take anything in, or can't keep anything down (or up!). We've gone through too many IV attempts holding our screaming baby down while too many people have attempted. We've had nurses, paramedics, anesthetists, and ultrasound guidance with minimal results. We are going to have orders at the hospital accessible to the nurses and doctors explaining Kara's FPIES and what her treatment needs to be. This should eliminate the stress of what we've had to go through in the past.

Also at this appointment we talked about this cough that Kara has had. I thought it started to go away once we eliminated dairy from Kara's diet but it didn't. It is now thought that she may/probably has asthma on top of everything else. Asthma and allergies run hand in hand and Kara was hospitalized with RSV last winter which puts her at even more risk of asthma. We've now started her on nebulizer treatments - two different meds twice a day. We have our follow up with the allergist next Thursday and we'll discuss this more at that time as well as request to have her tested for animal allergies and MN grasses and trees. I'm allergic to all animals and everything that grows outside so this wouldn't surprise me if she has this on top of everything else.

The other issue we addressed was Kara's weight gain, or lack of. She definitely seems to have an appetite but doesn't seem to be gaining any weight. She's stayed at 20 pounds for what seems like months now. We have her 15 month well child check in one month so we are hoping to see some change in that time.

The last issue went along with the weight problems. She just doesn't seem to be right digestively yet, despite the change in diet and new formula. We're not sure what this means but we have an appointment with a pediatric gastroenterologist again in August. We talked about how she'll probably need some additional testing done because it's felt that maybe she has more going on than what we've previously thought. We're prepared for testing, as we want answers but it's so hard to take all this in. We left this appointment quiet, not sure what to think, not sure what to share. We have a busy next few weeks.


Kara woke up with hives one day last week. I thought back to everything she had eaten and been around and came up with nothing. I had to call down to the allergist for some questions on the formula so I left messages with them about these hives as well as her family doctor. We had to keep a close eye on her and give her benedryl. I remembered 2 days later, after feeding her leftovers from Sunday night for supper that the Campbell's Vegetable Soup was something new that I had tried for the first time. Later that night her hives started again. I've gone over this ingredient list again and again and can't figure out what it was. At the advice of our family doctor we will be bringing this can to St. Cloud with us to have the allergist look at. We may never know what caused this, maybe it wasn't the soup but it sure was strange. She's never had a hives reaction before. Anything digestive wouldn't have surprised me any and she breaks out in eczema fairly often as well. We had her at the clinic on Thursday and she still had them but seems to be all cleared up now. The Epi-Pen is getting closer and closer to being a part of our lives every day!

Saturday, July 17, 2010

New Hurdles

With the news that the insurance company would cover Kara's formula at 80% we felt like we could tackle anything. I got on the phone over a week ago to get the formula ordered. It needed to be ordered through a medical supply store.

I contacted a med supply store to have them order it. I was told they don't 'do' formulas. Strike One.

I contacted another med supply store to have them order it. I was told they won't do it because the insurance companies allowed amounts are less than what they have to pay for it so they lose money. Strike Two.

I got on the phone with the insurance company again, the same gal I had been working with. She gave me the names of four more to call - two more in Brainerd, one in Little Falls and one in Milaca.

The third one in Brainerd didn't handle formulas and the fourth one was going to look into it. I called Milaca, they were going to look into it as well. I didn't bother with Little Falls, figuring it would be the same exact story.

After many, many phone calls back and forth between my insurance company and North Central Medical Supply in Brainerd I finally got the formula TODAY. EIGHT DAYS LATER. The people I worked with were great but this was a major stress that we shouldn't have had to go through the way we did. Anyway, I got eight cases of Neocate Jr today, 32 cans of formula. This should last about one month. Price: approximately $2,200.00. We'll see what the insurance company does with this.

Next month should be a breeze.

The Formula Battle

Neocate is an extremely expensive formula. When Kara was first prescribed it, I ordered it from our pharmacy at the hospital after calling around and finding that no medical supply store in the area had it in stock. I got a good deal on it - a case of it (4 small cans) was $125.00. When reading the directions, I found that it's one scoop per ounce, so you use twice as much as you would a regular can. This amounts to approximately one can per day since she needs 24 ounces/day to meet her nutritional needs. I wasn't quite sure how we were going to afford this but it was enough to get us started. Next came the battle of trying to figure out how to pay for it.

I did tons and tons of research on line, read other FPIES blogs and found out from many sources that there is a law in some states that amino acid formulas have to be covered under insurance. Minnesota is one of those states. WHEW. This process of getting the formula and getting it covered has been going on for two weeks and I STILL don't have this formula in my house. We are going on samples that we received at St. Cloud and the case that I had ordered.

I called my insurance company after work that first day. After talking to the rep and being put on hold too many times to count I hung up extremely discouraged. I was told that formulas are not covered. Period. I continued checking the Neocate website, sent some information to our doctor, had some other sources helping me out with this. I received some emails helping me out telling me that it has to be covered by insurance - Kara has the diagnosis to cover it and it would be against the MN law for them to not cover it. Again, on the phone with the insurance company. I was told that our policy is a "self insured" policy through the hospital. Self insured policies don't have to follow those laws apparently. I deal with insurance companies daily at work and battle them all the time but this was personal and I felt like I was at a complete loss. Luckily I was working with a really good rep and she looked and looked, asked question after question and I read the info about the law to her. We hung up so she could dig into it further. A short time later she called back and said it was right in my benefit plan description that it IS covered. Why no one bothered to look there to begin with (including myself!) is beyond me. What a relief, I wanted to reach through the phone and hug her, I was so happy. One more hurdle crossed!

Friday, July 16, 2010

The Dietician

One week after our allergist appointment we had a visit with a pediatric dietician back in St. Cloud. She went over the dairy allergy with us, noted that Kara was on Nutramigen and asked us how she was tolerating that. We told her that it wasn't going very well. She seemed to be really urpy and having nasty diapers again and this didn't surprise her one bit. We were told to take Kara COMPLETELY off of all dairy for one month to see how she does, if her skin clears up and her digestive track gets back to normal (whatever normal is for her) we'll slowly add it back in small amounts to see what she can and can't tolerate. She also said stick to the Neocate and sent us home with samples of it along with Elecare, a similar brand.

Dairy comes in lots of names on food labels. We were given cards to keep in our wallets of foods that contain these ingredients: milk, butter, casein, whey, yogurt, cheese to name a few. Both sides of this card are full. Also on it are foods that may contain the presence of milk like caramel, chocolate, flavorings, lunch meat, and hot dogs. Whew. I didn't know how we were going to manage feeding Kara!

We stopped at the grocery store on our way home while everything was fresh in our minds. We had lots to watch out for now - rice, oat, all that dairy and soy to be on alert for. Good thing Kara loves her fruits and vegetables, and can have wheat!

Wednesday, July 14, 2010

An Answer!

On July 1st, we finally managed to get some answers!

Kara saw a pediatric allergist at St. Cloud CentraCare Specialty Center. My Mom came with Kara and I to this appointment because Brian was unable to. The doctor we saw was the answer to our prayers after our experience at MN Gastro, he was an older gentleman who came in the room and LISTENED to us. I explained how we went to see the gastro doctor in January and everything that we went through there. Kara played on the floor as he listened to everything of what we've gone through with Kara. Kara sat so nice as he checked her all over and asked us additional questions. He decided that he wanted to do the scratch allergy test on her back for rice, oat, dairy, soy, peanut, egg, and a few others. I think Kara had 12 pokes on her back total. She had one nice big hive other than the control, only to the dairy. No rice, no oat, once again. Huh.

The doctor came back in after the testing was done and told us he believes that Kara has two things going on. One is a definate dairy allergy. The other is FPIES. We finally had a diagnosis, and one that we had been questioning for SIX months, since our gastro doctor told us that she DIDN'T have it. We went over a plan of what we could and couldn't give her. We definitely needed to stay away from all products with rice and oat in them as the reactions that she'd had put her into shock. As for the soy and dairy we were OK to do trial and error to see the severity hoping she could handle foods with lower amounts of dairy and soy in them. We were told that the epi pens are going to be no good for the kind of reactions that she has and if she were to have an FPIES reaction, she'd need IV fluids before she got too dehydrated. We briefly talked about Kara being on Neocate and he thought she could maybe handle Nutramigen so they sent us home with samples of that to try.

I left this appointment breathing a HUGE sigh of relief. It was so amazing to finally have some answers to what has been going on with my baby. I was overjoyed yet I had to remind myself that what we are dealing with is very serious. At the same time I was angry. We had six months of struggling with Kara, all because the doctor we had seen in January didn't listen to us.

Feeding Issues

When Kara was about 11 1/2 months old I stopped nursing. I was going to keep at it for as long as I could but with summer approaching, still pumping twice a day at work and an active baby that was losing interst, I made the decision to wean her, slowly though since she'd never had formula before. This process went extremely smooth, she never missed it and drank the formula with no problems at all. We were still struggling with getting her to eat though and had a referral in place to go to the feeding clinic at Children's to see if her issues were deeper than we thought. At dinner time one of us would end up in tears, either Kara, or I - it was so frustrating trying to get my baby to eat! She would turn her head in her high chair, cover her mouth and cry. I would be holding her head and hands while trying to literally shove a bite of bananas in her mouth because I KNEW she liked them! Once I would get the taste in her mouth she'd take a few bites and then stop again. We'd once again, resort to the bottle as her nutrition.

The process for getting into the feeding clinic was a long one. I received a packet of info in the mail that I had to fill out about Kara and her history. We had to do a 3 day food diary of everything that she ate and the exact amounts that she consumed along with the behavior with the meal. By the time we got this paperwork it was like something clicked in her. By day two of the food diary she didn't appear to have any feeding difficulties at all. I spoke with her doctor and we decided to hold off on the feeding clinic for now but keep it in mind for down the road if these problems came up again.

From the time Kara was 9 month until 12 months she had dropped from the 60th percentile to the 20th for weight. She had random vomiting episodes and really nasty diapers almost daily. At her 12 month well child checkup she was really sick with a nasty flu bug so everything was put on hold. We needed to get our poor baby healthy before we put her through anymore testing so we had a follow up in 2 weeks. We had a few things in mind to discuss at this appointment - the diarrhea, the vomitting, this harsh cough that she always seemed to have and the big, wet burps that she'd started having. We started discussing her possibly having reflux and went back to that "possible" dairy allergy. It was decided at that time to start her on soy milk and run the RAST test for allergies again before we went to the allergist. Her rast test showed an increase in the dairy levels, the peanut was the same so we now had a positive dairy allergy. We ended up back at the doctors office about 2 weeks after switching to soy because the soy wasn't working at all. Her vomitting had stopped, all the signs of reflux had stopped but in this time she started getting diarrhea again, she would no sooner drink a bottle and it would run right through her. We were told to start Neocate Jr. as her formula so she could get some sort of nutrition and hopefully maintain her weight instead of all this dropping in the charts. Our allergist appointment was scheduled for two days later.

Tuesday, July 6, 2010

Getting By

In the days following we very slowly and very cautiously started trying more foods with Kara, scared out of our minds. We found she was able to tolerate wheat and barley just fine. She was also able to tolerate bananas, applesauce and pears; carrots, sweet potatoes and peas. I think we stuck with this diet for quite a while because it was simple enough and it was safe.

We ended up seeing her family doctor for one reason or another shortly after her gastro appointment. I asked what our next plan was. We decided that it was probably not necessary to see the gastro doctor at one year since we didn't gain anything by seeing him in the first place and that at one year we'd go see an allergist instead and go from there. We had our safe foods list and just worked on getting Kara to get other nutrition other than breast milk alone.

In the next few months Kara had quite a few episodes of dehydration. It seemed that as soon as she got sick, she was down for the count. We had a few times where she required IV fluids and getting an IV started on her was a horrible battle! She also had random episodes of vomiting and diarrhea but we were never able to pin point exactly what caused it or what she had to eat. We just hung in there waiting for her to hit that one year mark so we could go for additional testing to figure out what was wrong with our poor baby!

Friday, July 2, 2010

The Gastro Trip

Back in January we made our first visit to the pediatric gastroenterologist at MN Gastro. Kara was almost 8 months old.

It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.

We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."

I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.

A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?

Thursday, July 1, 2010

Her Story

Kara has always had sensitivity issues, since being only weeks old. I remember bringing her into the clinic at about 5 months old when she was broken out in eczema pretty bad. The only thing different we had done was give her a small amount of rice cereal for the first time. We were told to stop and try again in a few weeks so at six months old we attempted the cereal again. She gobbled another small amount down and we were on our way, as we had an event we needed to attend that night. Kara started acting really strange about an hour later, very lethargic and a little fussy. Shortly after that she really started acting funny, like she wasn't quite with us. I remember holding her up saying her name as she vomited a very large amount all over me and seemed to pretty much pass out. I panicked, trying to get her to come out of this and she proceeded to do these vomiting episodes 3 or 4 more times in the next 20 minutes or so. At that point, I grabbed Brian and we were on our way to the ER. They observed her and decided that it was a vesovagal response to the vomiting, educated us on dehydration signs and sent us on our way telling us not to try the rice again for 2 weeks and see what happens.

At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.

Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.